The parents of two terminally ill children will take their battle to the High Court after a health watchdog ruled life-saving treatment should not be funded by the NHS.
Ollie and Amelia Carroll, eight and six, from Poynton, have been diagnosed with a rare genetic condition; Late Infantile Batten’s Disease, which could devastatingly shorten their lives.
Over time, both children are at risk of losing speech, mobility, sight and the ability to swallow.
Thanks to a specialist treatment, known as cerliponase alfa – which was given to children for ‘compassionate reasons’ – the effects of the disease were halted.
It is estimated that the drug could also increase life expectancy from 13 years to 60 years.
With the pharmaceutical company only able to provide the treatment for an indefinite period, parents Lucy and Mike, 32 and 33, had pinned their hopes on the NHS.
But in February last year they were heartbroken after health watchdog NICE concluded it could not recommend the drug for use by the NHS because it was too expensive.
The family have now been granted permission to take their fight to the High Court as they fight to overturn the decision.
A full hearing is expected to take place in October.
Ollie was diagnosed with the condition in February 2015. A second hammer blow came when Amelia was also diagnosed a month later.
The couple have two other children – Danny, 10, and Micky, nine.
Before starting treatment, Ollie had already lost his ability to walk, but his parents say the treatment has been very beneficial for him.
Amelia started treatment before her symptoms appeared and can attend mainstream school and practice dancing, gymnastics and swimming.
It is estimated that between 30 and 50 children in the UK have Batten disease. The specialist drug is already funded by the health services of 23 other countries, including Wales.
Lucy, who set up the Ollie’s Army initiative to support children, said: “Our children mean everything to us. We remain committed to fighting to ensure that Ollie and Amelia receive the treatment they need.
“It is heartbreaking to think that individuals have made the decision not to give our children access to the only treatment that could save their lives.
“We continue to hope that the NHS, NICE and BioMarin will work together to ensure that all children with Batten disease in this country have access to this lifesaving treatment.
“We would also like to thank everyone who has supported the Ollie’s Army initiative for their kind and generous donations and support.”
Saoirse De Bont, Irwin Mitchell’s lawyer representing the family, said: ‘We are delighted that the judge considering the application has agreed to have this case proceed and that there is now a date when this vital challenge will be heard.
“This treatment has made a huge difference in the lives of the four children involved in this case and it continues to be offered in an increasing number of countries around the world. Our customers find it heartbreaking that the NHS considers it could put a price on the lives of their children. It is clear that this issue needs to be reconsidered and we are determined to fight for the voice of our customers to be heard on this extremely important issue.